Different answers wanted please!

OK – so it turns out that I lied. Some time ago I said that I just wanted answers to my breathing issues. Apparently, that’s not true. I’d like answers that are easier to address, resolve and ideally cure!

I finally got an answer today as to why I am having ongoing breathing issues and I don’t like it. Can I have a different answer now please?

Apparently, to add to my Reactive Airways Dysfunction Syndrome (RADS), asthma and anaphylaxis, I also have Vocal Cord Dysfunction (VCD).

In fact, as it turns out, it’s quite possible that I could have had VCD for years as it is often confused with difficult asthma. So all the times that I’ve struggled with my asthma and not got relief from asthma medication I could have been having VCD episodes.

So I finally have an answer that makes sense. The problem is that I don’t like it! I don’t like it one bit.

The only effective treatment, at this time is speech & language therapy which can help teach me ways to force my vocal cords to relax.

Some specialists do undertake surgery but my specialist doesn’t recommend it for me as my breathing issues are compounded by my other diagnoses so the benefit would likely be extremely minimal. Speech and language therapy is always tried first anyway.

CBT can help as well, as stress can be a major contributor, but I’m already doing that!

Unfortunately, VCD can be triggered by stress, exercise and scents so even when I’ve mastered these breathing/speaking techniques I will still need to avoid triggers.

However I now have this additional problem in that I now have RADS so while I was really good at avoiding known triggers for me in the past; RADS means that any scent can become a trigger for me and things that I could cope with before I can’t now as I am much more reactive now than I used to be.

In fact, I had yet another anaphylactic reaction today in the ENT clinic. There was some confusion over my appointment and so the staff thought that I wasn’t attending today. As a result one of them bought a container of mixed fruit for her lunch. She was just biting into an orange segment as I was being taken past. Immediate anaphylaxis! One Epi pen later and removal of the orange piece and the staff member concerned and my response was relatively contained. Though I’m self-monitoring for a biphasic reaction at home and have my full anaphylaxis kit on standby.

Regardless, I now have four different reasons as to why I can be having difficulties in breathing and they each need treating differently! Though they do all have avoiding potential triggers in common.

I feel very sorry for the next group of Emerg. staff that have to treat me though. As examples:

  • Oxygen can help with RADS, anaphylaxis and asthma but Heliox (helium and oxygen) is needed for VCD.
  • Steroids are good for asthma and anaphylaxis but useless in RADS and VCD.
  • Antihistamines are essential for anaphylaxis but do nothing for asthma, RADS and VCD.

I guess the good news is that the worst that can happen is that if we treat for asthma, anaphylaxis or RADS when it’s VCD, the treatment will be ineffective; at which point I’ll pass out and start breathing properly again anyway!!

I am glad to finally have an answer but I’d really have preferred one that is easier to treat and live with please!

We also have yet to find the cause of my ongoing weird blood test results. One more week until I’m off steroids and then hopefully we’ll start getting some test results that make sense. The last set is totally contradictory and confusing!

On a related note  – more good news / bad news at the ENT clinic today. My Ménière’s disease is now stable which means that my most recent hearing loss is due to my Osteogenesis Imperfecta (OI); which means that it’s permanent.

Like my previous specialists, today’s ENT specialist also doesn’t advise surgery, CI’s or BAHAs for patients with OI so hopefully I’ll still gain some benefit from my hearing aids for a while longer.

Oh, and the pain in my ears?  A reoccurance of my old friend TMJ disorder. So it’s back to the heating pads for me. My perforated ear drum is healing nicely on its own and causing no issues so we’re leaving it be! Though why it spontaneously perforated nobody seems to know!

My body is weird!

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